Confronting Enigma and Stigma Of Chronic Fatigue Syndrome

By Rima Assaker Anna Gawel Uploaded on November 22, 2010

Back in 1975, Jacob Teitelbaum was working his way through college. Then chronic fatigue syndrome (CFS) derailed his life, and he ended up sleeping on park benches in Oklahoma. "It basically knocked me out of medical school," he said, "but I learned more about how to treat this disease when I was homeless than from my professors, who were pretty clueless about this disease."

Teitelbaum, now a medical doctor, researcher, lecturer and author, learned there's no cut-and-dried method to treat — or even diagnose –— this life-crippling condition.

Criteria for CFS

Chronic fatigue syndrome is a complex disorder that can devastate a victim's wellbeing and livelihood. It is characterized by overwhelming fatigue that is not improved by bed rest and may even be worsened by physical or mental activity. According to the Centers for Disease Control and Prevention, "People with CFS most often function at a significantly lower level of activity than they were capable of before the onset of the illness." Various estimates say that more than 1 million people are affected by CFS in the United States.

CFS patients report an array of symptoms, including weakness, muscle pain, difficulty remembering and concentrating, insomnia, and fatigue lasting more than 24 hours. In the worst cases, the disorder can plague its victims for years.

CFS is also very difficult to diagnose. There are no identifiable causes, and no specific diagnostic tests are available. Rather, patients must meet a list of criteria, including having severe chronic fatigue for at least six months or longer that impairs normal daily activities. This fatigue must be the kind that is not relieved by rest and is not the result of other medical or psychiatric conditions.

Other symptoms must also be present, including all or some of the following: short-term memory problems, concentration issues, frequent or recurring sore throat, tender cervical or axillary lymph nodes, muscle pain, multi-joint paint without swelling or redness, unusual headaches, un-refreshing sleep, and post-exercise malaise (extreme, prolonged exhaustion and sickness following physical or mental activity) lasting more than 24 hours.

But Everyone Gets Tired Right?

"There's a simple distinction," according to Teitelbaum, author of "From Fatigued to Fantastic!" and medical director of the Fibromyalgia and Fatigue Centers in Hawaii and other U.S. locations like Baltimore, Md. "If you're exhausted and you get a vacation, [when you have CFS] you're not going to feel better. If you get a good night's sleep, you're not going to feel better."

Nicole Lanning was diagnosed with CFS close to five years ago. "I really didn't understand what was going on," she said. "There was a major shift going on in my life, and my body pretty much shut down."

Lanning remembers not being able to do anything for her two small children and husband. "My family lives five minutes away from us, and I had to call them and say, 'Come take my kids to school for me,' because I could barely get out of bed."

Lanning, who resides in Toledo, Ohio, explained that CFS often develops when a person is going through trauma or major life changes or shifts. In her case, her two children started attending school (they had previously been home-schooled), the family had just bought a new car and home, and her husband just started a new job. "Everything just bottomed out at the time," she recalled.

Elusive Energy

Teitelbaum believes CFS is caused by an energy crisis in the body. "With CFS, it becomes so severe, people blow a fuse," he said, comparing it to energy in a home — if you're running too many space heaters and hairdryers at the same time, a circuit breaker gets kicked off.

"In people, this circuit breaker is called the hypothalamus, the brain's master gland that can be likened to the main circuit in your home's breaker box," Teitelbaum said, explaining that the hypothalamus is weakened by long-term exposure to physical or emotional stress, which can cause it to shut down. When the system "blows," all of the systems regulated by the hypothalamus malfunction.

"These systems include the glands, affecting the thyroid, adrenals and sex hormones; the autonomic system, which regulates body temperature; blood pressure and the anti-diuretic hormone; and the sleep center," Teitelbaum said. "All of those are on this one small circuit, and that's why it takes so much energy for that circuit to work — and that's why it goes offline first."

But Teitelbaum's theory is just that — one of a number of theories about what causes this condition, ranging from viral infections to psychological stress, although in most cases the exact causes remains unknown.

Some researchers believe CFS is caused by an abnormal reaction to common infectious agents, linking it to autoimmune diseases like Lyme disease and the Epstein-Barr virus, though no direct link has yet been proven. However, some studies suggest that the immune system may be chronically active in CFS patients, which would explain the fatigue and lack of energy. Put simply, the body believes it is fighting an infection when in fact it is not — and that takes a lot of energy.

Matter of Seriousness

A major lingering problem with diagnosing CFS is that people — including physicians — don't always take patient claims seriously. "There is no object marker and absolutely no evidence that you feel as badly as you do, which leads people to be dismissive of the illness. You just have to get over it and get going," said Dr. Alexander Chester, clinical professor of medicine at Georgetown University Medical Center and a physician with Foxhall Internists in Washington, D.C. "They're thinking, 'You're tired, I'm tired, everybody's tired.'"

Teitelbaum agrees that misperceptions and misdiagnoses abound. "If you go to a regular doctor, they will usually misdiagnose," he said. "Patients are told they're depressed, they're crazy, especially if they are women, and three-fourths of CFS patients are female."

So Chester — whose Foxhall Internists specializes in difficult-to-diagnose medical problems — recommends finding a doctor who specializes in CFS. "See a doctor who is well informed about the issue," he advised. "A major problem is that the general population has become tired of this issue and interest has waned."

Dr. Kent Holtorf, founder of the National Academy of Hypothyroidism and director of the Holtorf Medical Group in Los Angeles, Calif., echoed that sentiment. "Some doctors think it's a wastebasket diagnosis — if you don't know what the patient has, just call it that."

Holtorf agrees that finding the right doctor is essential. "Try to find a physician that really specializes in CFS and has the ability to do multi-system treatment, and not just look at what you have," he recommends. "Some people don't believe it exists. They think if a doctor can't treat it, it doesn't exist."

Holtorf also notes that medical workers are quick to blame CFS on depression. "Because this condition is often helped by controlling stress, some people believe it's all just psychological, which makes it seem like it's not a real illness," he said, adding that although many CFS patients are indeed depressed, "if you're sick for so long, of course you're going to get depressed."

No One Path to Healing

Overcoming CFS is not easy, and patients often must try various treatments to address individual symptoms. These include prescription or over-the-counter medications; complementary or alternative therapies; and emotional support from loved ones and sometimes even professional therapy.

The troubling part for patients is that medications do not target CFS specifically. Instead, they treat a litany of symptoms. Patients are usually prescribed antidepressants, antiviral drugs, allergy medications, nonsteroidal anti-inflammatory drugs to reduce pain and fever, low blood pressure meds and immune system boosters. Also being researched are psychostimulants, which may help with memory and concentration problems, as well as antibiotics to counter attacks on the immune system.